I have never been called a ‘Beauty’ but my chronic illness put up a barrier between me and the world every bit as tangled and high as Briar Rose’s thorn hedge. Being struck with M.E. really can feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished.
Even after nine years, trying to manage and learn about my condition often feels like trying to hack my way through a tangled, thorny mess.
And of course...I do sleep a lot

Thursday, 25 March 2010

Hm, I just made this post as a response on Don't Bully Me and you know what? The memory made me so darn angry I'm going to post it here too.

I was effectively bullied out of my job five years ago after getting ME because I simply lacked the strength and energy to get into a dragout fight with my employers. Amongst their tactics were: refusal to assign me parking closer to work than a ten minute walk; refusal to transfer me to an office much closer to my home and easily accessible by bus - even though their own doctor advised this urgently and there was a girl at the office in question willing to trade places with me; constant pressure to increase my partial hours after two whole weeks being back; refusal to transfer me to a non-physical role; constant inference that I was making life sooo much harder for my poor co-workers. Looking back, I regret giving in to them, but at the time I really was so ill I couldn't face a fight - heck, I couldn't even think straight. To anyone in a similar position now I would say - don't fight by yourself, get your union and the Citizens' Advice Bureau involved and stay signed off work if your employer won't respect the advice of doctors.

Some very interesting 'rapid responses' here to the BMJ 'defeatism' editorial comment. The essence of the comment is that we should all just perk up and jolly well embrace CBT and GET because after all ME doesn't cripple and kill that many people, and most of the people it kills die by suicide, so it's our own fault for not being guided by those nice psychologists who want to adjust our attitudes.

This unpublished response on the Invest in ME site also rang so many bells with me that I want to repost it here. I feel it admirably shows how supporters of 'it's all in their minds' are reacting to evidence contradicting them by simply repeating more often and more loudly their group-think - and why not, since it seems to be working :(

Submitted to BMJ.com 15 Feb 2010 12.47 GMT, as a Rapid Response to:

EDITORIALS:
Alastair M Santhouse, Matthew Hotopf, and Anthony S David

Chronic fatigue syndrome
BMJ 2010; 340: c738

Reasons for Patient Disenchantment.

Horace A Reid,
Ill-Health Retired Co. Down
Santhouse et al. congratulate themselves that research done by their colleagues at King’s College has underpinned the principal recommendations in NICE Guideline CG53.[1] As he has stated, Santhouse was himself a member of that Guideline Development Group.In fact the NICE GDG was frequently at odds with senior staff at King’s CFS Research and Treatment Unit. In 2007 NICE concluded that “Currently, the aetiology of CFS/ME remains unknown”; (Guideline CG53 p 69). But Professor Trudie Chalder, head of the King’s team of which Santhouse[2] is part, disagrees. She has stated unequivocally that CFS is a “classical psychosomatic disorder.”[3] Chalder is a registered nurse, specialising in CBT. In 2006 NICE emphatically refused to endorse any of the myriad theories that CFS/ME is a psychiatric entity.[4] But Professor Simon Wessely, Santhouse’s colleague at the King’s CFS unit, has long suggested the contrary. By resort to means of continual repetition, Wessely’s “functional somatic” hypothesis [5] has in many quarters acquired the status of scientific fact.NICE was not persuaded by lengthy submissions from King’s [6] that depression is a predisposing factor for CFS/ME. The GDG dismissed this claim in two curt sentences; (CG53 p 155). But in this present BMJ editorial, Santhouse et al. try to resurrect their self-serving theory that CFS and depression are integral.[7] In a press release in 2008, Professor Chalder claimed a 25% complete cure rate for CFS patients at the unit where she and Santhouse work.[8] In 2006 and 2007 NICE carefully distanced itself from such optimistic promises. The GDG said rates of full recovery are actually as low as 5-10%, [CG53 p 71] and warned that raising false hopes among patients would lead to disappointment.[9]In 2006 Chalder and others claimed that “Cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those who are currently absent from work.”[10] In 2007 NICE demurred: “There is a lack of studies in this area … More information is needed on functional outcomes such as return to work or education.” (CG53 p 61)Santhouse et al. describe CBT and GET as “treatments” for CFS/ME. As defined by NICE they are much less than that. They are merely techniques to help patients cope with an intractable and so far untreatable condition. In the words of NICE: “The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown. Rather, such interventions can help some patients cope with the condition"; (CG53 p 252).The authors seem to suggest that evidence for the efficacy of CBT/GET is “robust” for most of the patient spectrum. But Santhouse knows very well it is not robust. In a 2009 commentary on a Cochrane Review, he conceded that with only 40% of CFS patients benefiting from CBT/GET, the cumulative results “are more modest than its proponents would recognize.”[11] More damningly, he acknowledged the Cochrane finding[12] that the known and frequent adverse events associated with the GET/CBT combination, have never been scientifically evaluated. As Santhouse put it, “researchers have never really looked.”[11]Santhouse et al. record that “often” there is “breakdown of trust between doctors and the patients and their families”. This is a shameful situation, but it was predictable. And eleven years ago it was predicted, by a leading American CFS researcher.[13] His warning came in response to Professor Wessely’s “functional somatic” hypothesis, then first published.[5]The unattractive treatment philosophy currently obtaining at King’s deviates significantly from NICE guidance. Nevertheless it has been assiduously propagated, and has now been embraced across many parts of the UK. It is ironic that a number of valuable NICE recommendations remain unimplemented, while psychogenic theories proliferate. Nor is that any coincidence. It is easier, and cheaper, for doctors and social services to ignore and stigmatise severely-affected housebound patients like Lynn Gilderdale, than to provide the comprehensive range of home support services that NICE recommended. Such is the pervasive unwelcoming atmosphere in much of the NHS, that many thousands of ME patients have disconnected altogether from conventional medical care. Their fears of iatrogenic harm are well justified, given the hazardous, poorly-tested and unproven nature of the only “treatments” on offer.Comments in reference to Professor Wessely made by Professor Jason in 1999 could equally provide enlightenment for Santhouse et al. in 2010: “Biases toward psychiatric explanations for these syndromes have been filtered to the media … Perhaps the dissatisfaction with medical care that the authors cite as a common theme among patients with these syndromes, is the stigma they endure due to the trivialization ...”[13]Horace Reid.References:
[1] Turnbull N, Shaw EJ, Baker R, Dunsdon S, Costin N, Britton G, Kuntze S and Norman R (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children. London: Royal College of General Practitioners.[2] Who’s Who, Staff in the Chronic Fatigue Syndrome Research and Treatment Unit, King’s College, 2010.[3] Advertisement (ref. 07/R68) for a research worker, Institute for Psychiatry at the Maudsley, placed by Professors Ulrike Schmidt and Trudie Chalder, July 2007.[4] “Specifically, the GDG does not state that ME/CFS is a behavioural disorder, a psychiatric illness, a somatic/functional disorder, an illness belief, depression or anxiety disorder”. GDG response to Stakeholders’ Comments 2006: Chapter 5 p 45.[5] Prof S Wessely, C Nimnuan, Dr M Sharpe. Functional somatic syndromes: one or many? The Lancet, Volume 354, Issue 9182, Pages 936 - 939, 11 September 1999,[6] GDG response to Stakeholders’ Comments 2006; Chapter 1 pp 71-8.[7] Santhouse AM, Hotopf M, David AS. Chronic Fatigue Syndrome. BMJ 2010;340:c738[8] Press release, 12/5/2008, South London & Maudsley NHS: “Telephone Treatments for People With ME”.[9] GDG response to Stakeholders’ Comments 2006; Chapter 6 p 308.[10] Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, NHS Plus, 2006.[11] Review: CBT reduces fatigue in adults with chronic fatigue syndrome but effects at follow-up unclear, Alastair M Santhouse (commentator), Evid. Based Ment. Health 2009; 12: 16.[12] Price JR, Mitchell E, Tidy E, Hunot V. Cognitive behaviour therapy for chronic fatigue syndrome in adults. Cochrane Database of Systematic Reviews 2008; Issue 2. Art No.: CD001027.[13] Leonard A. Jason, Renee R. Taylor, Sharon Song, Cara Kennedy, Danielle Johnson, Dangers in Collapsing Disparate Syndromes, Lancet, Correspondence, Volume 354, Number 9195, 11 December 1999.
Competing interests: Patient with ME/CFS

Friday, 19 March 2010

Absolutely the best way I've ever seen of describing simply what it's like to live with conditions like lupus, ME, et al. Well worth reading the whole of, but I think for me the following paragraph is the most crucial one:

"Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."

Monday, 15 March 2010

Recently Mrs Ann Keen, secretary of state for Health, commented that people with Myalgic Encephalomyelitis were not able to donate blood. Invest in ME have written the following letter to the Secretary of State for Health, Mr Andy Burnham.

Rt Hon Andy Burnham MP
Secretary of State for Health
Department of Health
Richmond House
79 Whitehall
London SW1A 2NS

cc: Mrs Ann Keen MP

14th March 2010

Dear Mr. Burnham,

Recently Mrs Ann Keen (in her capacity as Under-Secretary of State for Health) made the following comments in relation to Myalgic Encephalomyelitis and blood donations –

"People with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), are not able to donate blood until they have fully recovered.

The reasons for this are: first, blood donors need to be in good health, and people with ME/CFS often experience a range of symptoms which could be made worse by donating blood; and second, as the causes of ME/CFS are not currently fully understood, people with the condition are deferred from donating blood as a precautionary measure to protect the safety of the blood supply for patients.”

Mrs Keen's comments are, we assume, representative of the government and your department.

Firstly it is good that your government recognises that people with ME are in poor health. This implies that all people with ME are therefore in need of proper healthcare provision which treats the disease properly.

Secondly it is good that you and your government recognise, by the implication from your statement, that blood supplies may be compromised by accepting people with ME as donors due to the organic nature of this disease.

Thirdly it follows that an embargo on people with ME donating blood would mean that there is an infectious agent at work which could be passed on via blood.

There follows several questions which lead on from this.

It seems to be crucial to use the most stringent diagnostic criteria available for diagnosing ME (which even NICE acknowledge as being the Canadian Consensus Criteria). Yet your department, NICE and the MRC do not standardise on this internationally accepted standard for diagnosis of ME.

When you state that people with ME are not able to donate blood are you employing the NICE guidelines for defining patients as having ME? If so then why does NICE proscribe serological testing unless there is an indicative history of infection? If no initial indication of infection is present then no further blood tests are performed and a patient may receive a diagnosis of ME based on ongoing fatigue and one other symptom such as sleep disturbance. Why then would those patients be excluded from donating blood?

As your government officially accepts ME as a neurological illness, as described by the World Health Organisation ICD-10 G93.3 code, and as the issue of blood contamination from an infectious agent demands the utmost care and attention, is it not of absolute necessity for your government to demand that a consistent set of up-to-date diagnostic criteria are used as standard by all organisations?

Your department often states that the Medical Research Council is an independent body. Yet as it is apparent that the MRC only funds psychiatric studies which presume that ME is a behavioural illness why does your department refuse to comment on the MRC’s usage of the Oxford criteria for research into ME which expressly excludes people with a neurological illness?

Why does your department not criticise the MRC for funding purely psychiatric research into ME if you fully recognise that ME is a disease of organic and infectious nature? Since when did a psychiatric illness prevent blood donations? Does this not clearly show the MRC policy of research into ME for the last generation to be completely flawed and a waste of precious funding and patients' lives?

When you state that people with ME are not able to donate until fully recovered please can you define what “fully recovered” means?

Could you also provide a description of how a person with ME is defined as no longer having ME?
What biomedical tests are available to determine that a person with ME is “fully recovered”?
Could you inform of how and when clinicians perform such tests in order to ensure that a person is "fully recovered" from ME?
Bearing in mind the seriousness of a possible contamination of blood supplies from people with ME please could you indicate what measures are in place to ensure that doctors do enforce testing to ensure that people with ME are "fully recovered" and will not therefore donate blood?

If such a test exists then presumably people with ME who are not recovered are entitled to appropriate benefits due to incapacity and/or disability?

As relapses are common with people with ME please could you explain if there is any minimum period which a person with ME needs to be “recovered” to be able to donate blood?

Could you also provide information which your government has on the number of people with ME in this country, the proportion of patients who have had ME for longer than five years and how many people with ME have “fully recovered”?

With regard to your statement that “the causes of ME/CFS are not currently fully understood” is it not inherent on the Chief Medical officer of the UK to attend the5th Invest in ME International ME/CFS Conference 2010on 24th May in Westminster, as guest of Invest in ME?

As the foremost experts on ME in the world are presenting at the conference, along with the Whittemore-Peterson Institute – who have recently been involved in the discovery of the XMRV retro-virus which has possibly huge considerations for the blood supply of this country – would it not be sensible for anyone who is involved in healthcare and particularly in the treatment of people with ME to attend this event?

Should not the government of this country also be sending a representative to the conference given that contamination of the blood supply by people with ME may be occurring and that education about the disease needs to be a pre-requisite for anyone involved in healthcare provision for people with ME?

We would request that you provide a full and complete answer to every single one of the questions which we have asked in this letter and we look forward to your reply,

Saturday, 13 March 2010

Reposted from Andrea Pring. This is her response to the BMJ podcast on CFS. Why in the name of double-choc chip are people still giving Wessely places to spread his propaganda? Do follow the link to read other responses too.

I just want to quote briefly from one response (John's) and then it's over to Andrea.

John wrote: "CFS patients don’t and never have objected to there being ‘a social or psychological component to illness’, they object to the ignorant supposition, in direct contradiction to thousands of papers comprising the biomedical research literature, that CFS is a primary psychiatric or behavorial disorder which can be fixed with talk therapy, as would any patient suffering from any organic disease process."

Andrea wrote:

PERMISSION TO REPOST

Shame on you BMJ for your incredible bias. You have interviewed two researchers who refute the initial Science study by Lombardi et. al. but where is the balance? Where is the interview with Dr. Judy Mikovits or any of the other Lombardi researchers?

Where is your accuracy? The cohorts involved in the Lombardi study were NOT specifically from CFS outbreaks, they included patients from other parts of the US as well as the UK.

The need for more detail in the methodology is a moot point because a supplement was published by Lombardi et. al which gives more detail; more, might I add, than any of the negative studies. One only has to take a brief look at the Dutch study and compare it to Lombardi’s to see how pale in comparison it is. Had the neurologist bothered to do her research, she would have known the supplement exists. One wonders how much she actually read before forming her opinion.

Simon Wessely mentioned that he isn’t involved in ME/CFS research much anymore, yet he is one of the very researchers who has tried to disprove the theory. His paper was the first to trumpet loudly (through all the media channels Wessely has under his control as one of the board members of New Labour’s Scientific Advisory Panel) that THERE IS NO XMRV IN THE UK (as if a virus needs a passport – tell that to HIV). You may also ask why a psychiatrist is involved in a virology study at all. Let’s just say he makes a nice little earner with the ME/CFS clinics that he helped set up. Clinics that are psychiatric-lead and offer nothing but talk and graded exercise therapy. If a virus were found to be the cause of the illness he may well come down with a touch of Empty Pocket Syndrome.

You might also notice, if you were listening carefully, that the Dutch researcher said that he had to be fast, so he used frozen samples. Ask yourself why would he need to be fast? Why would he need to rush a study to publication? All three of the negative studies were clearly very clumsily put together, used ill-defined samples; i.e. used a conglomerate of patients presenting with fatigue but not necessarily ME/CFS. More specifically they did not use the same definition for ME/CFS, but used a definition that does not include one of the defining symptoms - post exertional malaise. Finally none of the studies made any attempt to follow the Lombardi study’s methodology. They cannot, therefore, be classed as replication studies and do not refute the initial findings. I believe the studies that are still being carried out will come up with more evidence. We need to be patient before we draw any conclusions. Readers may be interested to know that there are many patients from the UK who are sending their blood to be tested in the States and are coming back positive. But you won’t hear Simon Wessely mention that.

In terms of time spent in the peer review process, Wessely’s study was peer-reviewed for a few days and published in a ‘pay-to-publish’ online journal. In contrast the Lombardi study had a 3-month peer review period before publication in one of the world’s most renowned scientific journals, Science.

The three negative XMRV studies were all published in quick succession (along with Wessely’s brazen commentary) in an effort to dampen and quieten the interest in the virus. Why else would the Dutch researcher (who also favours the psychiatric-lead approach and has much to lose if a virus is found to be the cause) say that they had to work fast? What would they have to gain by rushing a study?

There is a lot of politics at play here, politics that may well be leading sufferers further down the garden path to ill-health. Patients in the UK are not given adequate testing or appropriate treatment. All that is offered to them is psychiatric measures. Psychiatric measures will not cure a serious NEUROLOGICAL disease (were you aware that M.E is classified as a neurological disease by the WHO and has been since 1969?) and neither will ‘rehabilitation’. You wouldn’t give a cancer sufferer CBT alone. Then why is it deemed appropriate to treat an ME/CFS sufferer this way? Yes CBT might help someone deal with the emotional problems they may have as part of a chronic illness, but that should be part of a wider programme of care and most certainly not the core treatment. The UK is in the dark ages in comparison to other countries. It’s an outrage that people are left in their beds for years, with tubes coming out of every orifice and no proper treatment other than pain relief and antidepressants. It’s a national disgrace.

Friday, 12 March 2010

This group (mah heroes!) has been running since 1999 and has now given us their final report which expresses dismay and disgust at the current state of NHS and DWP care for people with M.E./CFS

Will work through the report in coming weeks, but I wanted to quote just one bit right away:

"Compared with diseases such as cancer, ME/CFS is less expensive to treat. It is certainly

less expensive than the cost of complacency. The cost to society by paying

benefits and providing social care; the cost of lost taxes and income and the cost to

the patients, both financial and emotional, is far more expensive than the cost of

adequate research, diagnosis and treatment. This is an issue that must be addressed."

PRESS RELEASE

Final Report: All-Party Parliamentary Group inquiry into NHS service provision for people with M.E.

11 March 2010

Dr Des Turner MP, Chair of the All-Party Parliamentary Group (APPG) on M.E. released the final report of the Group’s Inquiry into NHS service provision for people with M.E. at yesterday’s meetingof the APPG:

Wednesday March 10th, 1.30-3 pm, Committee Room 18, House of Commons

The inquiry set out to evaluate the extent to which the NHS is providing care for people with M.E. (Myalgic Encephalomyelitis) in England, particularly in primary and secondary care, and in specialist centres/teams.

The report sets out 11 recommendations to address the inequalities faced by people with M.E. The report can be read in full here.

Dr Des Turner MP says:

“Our report sets out clearly some long standing problems which are simply not being tackled by organisations that should be doing a much better job of supporting the 250,000 people in the UK with ME/CFS. We are particularly concerned by the failure of many Primary Care Trusts to fund any services for ME/CFS patients especially children and the most severely affected. We are also deeply concerned by the by the poor knowledge that many doctors have about this illness and by the failure of the DWP and its contractor ATOS to understand its adverse impact on many patients’ ability to undertake regular work.”

ENDS

Issued 11 March 2010 by Kimberley Hogarth

Notes to editor

1. What is M.E.? Myalgic Encephalomyelitis/ Encephalopathy (M.E.) is a chronic fluctuating condition, also known as Chronic Fatigue Syndrome (CFS) and sometimes diagnosed as Post Viral Fatigue Syndrome (PVFS). It affects 250,000 adults and children in the UK.

The National Institute of Health and Clinical Excellence (NICE) recognises that the physical symptoms of M.E. can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions.

2. The All-Party Parliamentary Group (APPG) on Myalgic Encephalomyelitis (ME) was set up in 1999 to raise awareness of ME.

The Group campaigns within Westminster to support the improvement of health, social care, education and employment opportunities for people affected by ME. The Group also aims/campaigns to obtain wider recognition of the need for biomedical research into the underlying cause of ME and effective forms of treatment.The current office bearers are:Chair: Dr Des Turner MPVice chairs: Anthony Wright MP, Andrew Stunell MPTreasurer: David Amess MPSecretary: Countess MarAction for M.E. and the ME Association provide the Secretariat services.Meetings are held 3-4 times per year, depending on availability of speakers.The APPG has launched an Inquiry on NHS service provision for people with ME. Click here for more details.

3. Action for M.E. (www.afme.org.uk) is the UK’s leading charity working to improve the lives of people with M.E. The charity provides information and support to people affected by M.E. and their carers and campaigns for more research, better treatments and better services for them. It has a volunteer support line, welfare rights line and a range of helpful booklets and leaflets.

Tuesday, 9 March 2010

Hm, maybe NICE's reply has something to do with this parliamentary exchange between the Countess of Mar and Lord Darzi of Denham (speaking for the Dept of Health) from May 2009:

Health: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Question

Asked by The Countess of Mar

To ask Her Majesty's Government whether the National Institute for Health and Clinical Excellence guidelines on chronic fatigue syndrome/myalgic encephalomyelitis are to be reviewed; and, if so, when. [HL3075]

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): The National Institute for Health and Clinical Excellence will consider in August 2010 whether there is a need to review its clinical guideline on chronic fatigue syndrome/myalgic encephalomyelitis.

The response to Malcolm Hooper suggests they will not be (and are not interested in) considering the matter in full possession of the facts...

I'd urge anyone who wants to get a clear picture of the extent to which evidence that supports any other view has been ignored, to read this in full. Yep, all 442 pages of it!

Unlike NICE, who as you will see from the correspondence below have returned it unread and refused to enter any correspondence on the matter. On the curious grounds that

"You are obviously aware that NICE has, in the recent past, been involved in defending an action for Judicial Review over the ME/CFS guideline we published a couple of years ago. Although judge found in favour of the Institute the legal costs were considerable. I am afraid, therefore, that I am not prepared to enter into any correspondence on this matter."

Not prepared to look at evidence?

Not prepared to enter a scientific dialogue?

Is anyone else as utterly bewildered by this as I am?

On their own site, NICE boasts ( I have highlighted a few words that seem relevant):

"NICE guidance is:

designed to promote good health and prevent ill health

produced by the people affected by our work, including health and social care professionals, patients and the public

based on the best evidence

transparent in its development, consistent, reliable and based on a rigorous development process

good value for money, weighing up the cost and benefits of treatments

internationally recognised for its excellence"

And again:

"NICE guidance is developed using the expertise of the NHS and the wider healthcare community including NHS staff, healthcare professionals, patients and carers, industry and the academic world.

And:

NICE guidance aims to ensure that the promotion of good health and patient care in local health communities is in line with the best available evidence of effectiveness and cost effectiveness

That would be apart from the 442 pages of evidence they return unread with a slap in the face to the scientists who presented it and 250,000 patients, then?

Please read the correspondence below, and the painstakingly-researched and prepared document that NICE refuses even to keep on their premises.

Because Malcolm Hooper is not the only one who finds "the continuing denial and unwillingness to face the biomedical evidence both puzzling and incomprehensible."

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC

Emeritus Professor of Medicinal Chemistry

School of Sciences

Fleming Building

Wharncliffe Street

University of Sunderland

SUNDERLAND SR2 3SD

Chief Scientific Adviser to the Gulf Veterans' Association

President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

19 February 2010

Dear Sir Michael,

I am a ‘blast from your past’. I was at Sunderland School of Pharmacy and you were at Newcastle in Clinical Pharmacology when the M.Pharm course in Pharmacokinetics was developed. Congratulations on your eminent status and knighthood.

Since 1997, when I retired as Professor of Medicinal Chemistry, I have been involved with the emerging and widespread complex chronic multi-system illnesses (Gulf War Syndrome/Illness, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, ME/CFS, multiple chemical sensitivity, MCS, Aerotoxic Syndrome, organophosphate and other pesticide poisonings) that are of growing concern and are medically challenging -- writing and lecturing, locally, nationally and internationally.

This letter is linked to my concerns about ME which involves some 240,000 people in the UK with varying degrees of disability. Some 25% are housebound or bed bound and have formed their own group,www.25megroup.org/ .

The 442 page report “Magical Medicine, how to make a disease disappear”, copy attached with the press release, together with a copy of my letter to the Minister, Lord Drayson, currently the Minister responsible for the MRC, brings together an extensive and fully referenced review of the literature on ME.

It provides the evidence supporting my complaint about the MRC PACE Trial to Lord Drayson.

The entire report, the press release and the letter of complaint have now been circulated worldwide on the internet and have received much acclaim and support from the major ME organisations in various countries and numerous individuals, as well as academic institutions. The report is to be discussed by the International Association of CFS/ME at its next board meeting in early March, as confirmed by the President, Professor Fred Friedberg from the US.

Despite the vast amount of biomedical literature (some 5000 papers) going back to 1934 and the classification of ME as a neurological illness by the WHO (ICD-10 G93.3) since 1969, the official UK attitudes as demonstrated by the MRC, DWP, Department of Health, and to some extent your own organisation NICE:

a. ignore all this evidence

b.show an ideological commitment to a psychosomatic/behavioural model of the illness which is no longer tenable

c. recommend only cognitive restructuring techniques (CBT and GET) that are “not remotely curative” and have been shown to be of no lasting value and in the case of GET to be positively harmful (Peter White’s assertion that this is because the interventions have been incorrectly administered has been shown to lack credibility)

d.proscribe any investigative tests to identify the disorder, leading to missed diagnoses and misdiagnosis

e.support cruel, even vicious, actions that lead to patients being wrongly sectioned and parents, particularly mothers, accused of Munchausens’-Syndrome-by-Proxy, MSBP.

f. the result is that essential benefits and insurance payments to support patients and their families have not been paid or have been granted only after protracted and expensive legal action. All this adds to the burden of the illness for patients and for those who care for them.

The psychiatrists’ argument that what they refer to as “CFS/ME” is substantially different from past epidemics of ME does not withstand scrutiny in the light of current knowledge. It is beyond question that ME is associated with a severely disrupted immune system which renders patients more susceptible to both further viral and chemical challenge and reactivation of latent viruses and persistent viral-specific symptoms.

For the psychiatrists to amalgamate 25 different disorders (Holgate, RSM July 2009) and to focus on “medically unexplained fatigue” whilst ignoring cardinal symptoms of ME is a travesty of medical science.

Of special concern and relevance are the legal and ethical requirements facing doctors today, in particular, the legal requirement for doctors to keep up to date with developments in medicine and medical science (as clearly set out in “Good Medical Practice: Duties of a doctor.The duties of a doctor registered with the General Medical Council: 'Keep your professional knowledge and skills up to date' and 'Never abuse your patients' trust in you or the public's trust in the profession' (http://www.gmc-uk.org/guidance/good_medical_practice/duties_of_a_doctor.asp).

Ignoring vast swathes of evidence is not keeping up to date. For any registered medical practitioner – consultant or GP -- to dismiss or ignore this widely available evidence which invalidates the behavioural model of “CFS/ME”, together with the prescription of inappropriate interventions, is in clear breach of the GMC regulations and consequently raises issues of medical indemnity.

As noted in the report: “since the general body of knowledge known about by other clinicians and researchers working in the field of ME/CFS is now so great, the question repeatedly asked is: at what point will that body of scientific knowledge be so great that it will be considered serious professional misconduct to ignore it and to continue to deceive patients by pretending that it does not exist?”.

The recommendation not to carry out appropriate investigative tests is inconsistent with the Hippocratic Oath in its ancient or modern form.

The offering of treatment that is known even by its proponents to be ineffective is a betrayal of doctors’ responsibility to their patients. Merely to pronounce that the onus is on the individual doctor, when adherence to NICE Guidelines is to become compulsory, is unacceptable.

Inappropriate sectioning of patients and false diagnoses such as MSBP represents a further betrayal.

To rely on only a few studies, showing very modest efficacy, all of which having been shown to have very serious flaws (as is the case with the PACE Trial) and enshrine this inadequate information in official directions, publications and statements from authorised bodies, including NICE, is utterly unacceptable and dishonours the name of medicine as well as being destructive of lives of sick people and those who care for them.

I draw to your attention the commissioned editorial in last week’s BMJ by Alistair Santhouse, who you will be aware was a member of the CG53 GDG. Please read the attached eBMJ response submitted by Horace Reid, a former long-serving NHS clinician. It was rejected for publication, a fact that is revealing in itself, given that it is impeccably accurate.

I would ask you in your role as Chairman of NICE to engage fully with our report and act accordingly to right the long standing wrongs that people with ME have suffered for the last 20 years.

National Institute for Health and Clinical ExcellenceMidCity Place71 High HolbornLondonWC1V 6NA

To: Professor Malcolm Hooper

2 Nursery CloseSunderland SR3 1PA

02 March 2010

Dear Malcolm,

Thank you for your letter and for enclosing "Magical Medicine: How to Make Disease Disappear".

You are obviously aware that NICE has, in the recent past, been involved in defending an action for Judicial Review over the ME/CFS guideline we published a couple of years ago. Although judge found in favour of the Institute the legal costs were considerable. I am afraid, therefore, that I am not prepared to enter into any correspondence on this matter.

Thank you for your letter and the returned copy of Magical Medicine which I found very disappointing and disconcerting.

To be faced, yet again, with the denial and dismissal of the comprehensive amount of biomedical evidence about ME that has been presented in some 5000 published and peer-reviewed papers is disturbing and has sinister connotations devoid of any compassion.

Failure to consider this evidence means that any policy towards people with ME will be "built upon sand" in defiance of the basic principles of scientific inquiry and any consideration for very sick people, their families and carers

As a fellow medical scientist I find the continuing denial and unwillingness to face the biomedical evidence both puzzling and incomprehensible.

We know Government is committed to funding research that is perceived to support policy, an attitude that has, in this case, lead to lack of scientific rigour, integrity and humanity in order to avoid developing a policy based on the biomedical evidence available in this complex and difficult area of medicine.